Have you ever wondered what life is like for your loved one or client who is suffering from Alzheimer’s disease? Well, a conference hosted by the Alzheimer’s Foundation of America, a few years ago, attempted to provide caregivers the opportunity to experience firsthand some of the ways that Alzheimer’s disease not only robs your loved one of his or her memory but negatively impacts his or her judgment and, over time, causes problems with the ability to speak and write as well. Yet it is fair to say that the aforementioned symptoms of the disease are not all encompassing. Alzheimer’s is a long-term and devastating disease.
It is important to mention that an outcome of the simulation was that caregivers had the ability to gain a level of understanding of Alzheimer’s without having to personally receive the diagnosis. And yet, even through simulation, you cannot experience everything that your loved one or client is experiencing or will experience both physically and emotionally as the disease progresses. The truth is that you have very little control as it relates to the disease. However, what you can control is providing the best care for both you and your loved one. You have the ability to avoid feelings associated with guilt and to reach out to others so that you do not burn out. In fact, if you are caring for a loved one suffering from Alzheimer’s disease, empowerment and resilience can be the key to maintaining your wellness and enhancing your longevity as a caregiver.
Caregiver Wellness: U Model
Empowerment and resilience are two components of the Caregiver Wellness: U model, a conceptual model that incorporates the movement toward social, psychological, physical, intellectual, spiritual, occupational, and financial wellness, while also incorporating the empowerment and resilience necessary to take charge of your health on a holistic basis. The components are not chronological; rather, they represent collective components.
The importance of empowerment and resilience
According to the Caregiver Wellness: U model, you are empowered when you are fully engaged in and execute healthy behaviors that might improve your caregiving situation. In fact, once you are empowered, you are better able to assist your loved one in living life with greater fulfillment, and you are more likely to take responsibility for your own health and wellness, in addition to the well-being of your loved one.
Resilience is equally important to the Caregiver Wellness: U model and is a strengths-based term that refers to your ability as a caregiver to adapt positively, despite challenging care-related situations, such as encountered in caring for a loved one with Alzheimer’s disease. Your ability to be resilient is also important because high mortality rates are associated with caregivers who are distressed and who do not make improvements to their caregiving situation.
Are you empowered and resilient?
Please take this opportunity to evaluate your combined levels of empowerment and resilience. There are five statements; consider each statement openly and honestly. Assign two points (2) if you agree with the statement, one point (1) if you somewhat agree, and do not assign any points (0) if you do not agree with the statement.
I trust my instincts when it comes to caring for me and my loved one.
I tend to recognize that I am just one person and try not to feel guilty.
I tend to focus on what I do best rather than fret about areas where I would like to improve.
I have or am serving as a role model or mentor for a family caregiver with whom I can share my experiences.
I pat myself on the back from time to time for all that I am doing to care for myself and my loved one.
Evaluate your combined Empowerment and Resilience score
A score of 7 or higher may indicate that you are empowered and resilient as a caregiver.
A score between 4 and 6 may indicate that you are somewhat empowered and somewhat resilient.
A score between 0 and 3 may indicate that you might want to reach out for help, a vital step to becoming empowered.
The following are tips and resources to enhance your empowerment and resilience as a caregiver.
See the real me. One of the most important ideas regarding empowerment was shared in an interview with Anne-Marie Botek, editor in chief at AgingCare.com, where she shared the importance of caregivers seeing the real me of the person diagnosed with Alzheimer’s disease. The concept of seeing the real me rings true for both the caregiver and the loved one diagnosed with Alzheimer’s disease. It is vital to acknowledge the relationship that existed prior to the diagnosis of Alzheimer’s and the likelihood that there will be a stronger yet changed relationship while you are caring for your loved one. This higher level of thinking may allow you to remain resilient even through the most challenging circumstances. Remembering who the two of you were together before the diagnosis may also aid your understanding of the transformation and sacrifices that the two of you are making for each other. When you are at your wit’s end, don’t forget to take a moment to think about what you mean to each other.
Open up and share. Fade to blank on AgingCare.com is all about empowerment. In fact, according to Anne-Marie Botek, editor in chief at AgingCare.com, “the best way we help people is to understand the disease. Therefore it is important to open up and share.” Far too often as a caregiver, you are providing support and care in isolation and sometimes in silence. You may not realize how the simple act of reaching out for support can contribute to your well-being. Visit and participate in the conversation being held on the Fade to Blank website. Hearing directly from others suffering from the disease is vital.
Visit the House of Care. The House of Care is an interactive tool that can be accessed on Care Crossroads and is a resource offered by the Alzheimer’s Foundation of America. The interactive tool offers suggestions as to how to assist your loved one using a room-by-room simulator. The tool can be used to assist you and your loved one at the beginning, middle, or end stages of the disease.
In summary, according to the Alzheimer’s Foundation of America’s website, as many as 5.1 million Americans are suffering from Alzheimer’s disease. Yet, according to Anne-Marie Botek, “no one is really talking about the disease itself.” What is crucial it that you and your loved one suffering from this devastating disease are empowered to share as much as possible about your experience so that others may gain a better understanding of what it is really like for both you and your loved one. Because although statistics and research have played an important role in improving treatment and awareness over the past three decades, empowered and resilient caregivers will play an even more important role in the future.